Headache Specialists Talk Migraine

At the 60th Annual American Headache Society (AHS) Scientific Meeting in San Francisco this past June, I had the opportunity to sit down with three headache specialists – each of whom have been my personal doctors:

Dr. Jessica Ailani, Associate Professor of Neurology at Georgetown University Hospital and Director of the Georgetown Headache Center

Dr. Andrew Charles, Director of the UCLA Goldberg Migraine Program, and Meyer and Renee Luskin Chair in Migraine and Headache Studies at UCLA

I am grateful to have had each of them with during different parts of my life and my chronic migraine journey.

Dr. Jessica Ailani

The specialist who broke the news I went from episodic to chronic

I had made an appointment to see Dr. Jessica Ailani after going to a presentation in Oct 2010 on nerve decompression surgery for migraine. I couldn’t get an appointment until the end of January 2011 to see if I was a candidate for the surgery. I’d had episodic migraine since childhood and they were frequent enough that I wanted relief, even if that meant surgery.

On January 3, 2011, I got a migraine attack that has never stopped. It was pure luck that I already had an appointment with a headache specialist. By the time I reached her office I had been bedridden for three weeks, not able to work or able to take care of myself.

I’ll never forget the day she told me I had chronic migraine. I didn’t even know that could happen. My world was crashing. She knew it and helped me through it. “First it’s import to listen, and second, it’s not the same solution for every person,” says Dr. Ailani. There’s an “art of finding out what the individual needs and helping them get there.” It wasn’t about a pain scale, it was about quality of life. She’s invested in her patients: “We want to know when our patients are doing better even if you don’t come in to see us – we want to know if something we did helped.”

Needing more manpower to serve migraine patients

Seven years later at AHS, we talked about the patient journey to migraine diagnosis. Dr. Ailani emphasized the importance of training health care providers to care for migraine. “Neurologists are seen last after the patient usually sees the PCP, goes to the ER, sees an ENT, an ophthalmologist, a dentist – we’re usually the last resort. This is a brain disease. I’m part educator, part clinician, part researcher. We need more manpower. We need to train people who are able to make a big impact on those who are hit hard by this disease in the prime of their life. It starts small but it grows exponentially when other PCPs and doctors get interested. For PCPs, their patients tend to be their patients for decades so the PCPs need to be armed with tools to help all those with migraine.”

Dr. Stephanie Nahas

Referred to Jefferson Headache Clinic

A few years after Dr. Ailani had thrown everything at me and I was still not improving, she did the best thing a doctor could ever do. She told me she was running out of ideas, but wanted me to go to the Jefferson Headache Clinic in Philadelphia, where she herself had received her training in headache medicine.

Jefferson has an in-patient program that uses ketamine to bring down pain levels or break bad cycles of intractable periods. It had been three years of non-stop migraine attacks. I researched ketamine and decided I wanted to pursue this route. I attribute ketamine hospitalizations and the nasal spray I have to use at home as the main reason I am able to function better than three years ago. The pain never subsides, but the use of ketamine brings the severity down for me.

Doctor patient relationships: open communication

When catching up with my Jefferson doctor at AHS about doctor/patient relationships, Dr. Nahas says it should feel like an alliance. Both doctor and patient need to set expectations. “People who have migraine and other headache disease have been silenced after years of being met with resistance and were stigmatized,” says Dr. Nahas. She encourages patients give feedback to their doctor, they want the chance to make the relationship right.

Some patients are hesitant to speak out but then “doctors can be blindsided when their patients don’t feel heard when it’s not the intent.” If it’s difficult to verbalize your frustrations during an appointment, she suggests sending an email with your concerns or dropping off a letter. Dr. Nahas also believes that patients shouldn’t be afraid to get a second opinion. “Taking a fresh look is always worthwhile.”

Dr. Andrew Charles

When I moved from DC to LA, Dr. Andrew Charles became my headache specialist. Dr. Charles has been at the forefront of researching calcitonin gene-related peptide (CGRP). Approved in May 2018, the first CGRP inhibitor drug, Aimovig, has been in high demand. By mid-June, his practice had signed up 300 people.

Demand for CGRP and long-term impact on migraine

Now with a larger population than those in the clinical trial, Dr. Charles emphasizes the importance of documentation to keep an eye on benefit and any adverse effects. It’s especially useful to have these data for insurance companies when they decide to approve CGRP inhibitors. Dr. Charles explained that quantifiable measures can really make the case for coverage since this new treatment could mean, “less ER visits, more people being able to be productive in the job force, and less need for acute meds.”

Dr. Charles looked further down the road and how the face of medicine could change: “The notion that we can use monoclonal antibodies to go after antibodies is equally exciting. This is beyond our imagination thinking about different targets of migraine. This is a new treatment – the technology itself will lend itself to other targets. In MS and brain cancer. We’re applying it to migraine.”

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Comments

I have had 2 Amovig (70mg each)injections – one July 16th and the other August 15. No particulars to report on the 1st shot but I held strong and optimistic. I have been a migreneur since age 5 and am now 71. I had been waking every morning with migraine for the last 8 mos and had been taking 1/2 amerge every morning which is a no no. My neurologist diagnosed me with medication overuse headaches and said I probably would need to withdrawal from Amerge before the Aimovig would be very useful. Dreading another hellish withdrawal of pain, vomiting, crying, moaning, mad at God etc., I prepared for the withdrawal which turned out to be 2+ days in bed instead of 4-5 days. No vomiting, moaning, feelings of desparation etal. I took P. Every 6 hours for nausea. I weathered the withdrawal so much easier than all the times before (less intense and shorter in duration) and I just have to give Aimovig the credit. I was amazed and grateful beyond belief. That withdrawal started aug 12 and in the 8 days I had my 2 withdrawal days 3 headache free days and the remainder days have been a mix a touch nausea, some parts of the day pain free but able to function quite well. I’m feeling Blessed. I’m staying cautiously optimistic however and trying not to make many committments, take things slow and easy. Would love to hear others experiences.